By Josh Dower, MD, and Christy Orndorff, RN
Expecting parents expect doctor’s appointments and morning sickness. They don’t expect to hear the words, “We are worried that there may be something serious.”
When families receive that news, before or after the child’s birth, a wave of thoughts and emotions can crash over them – diapers and first steps and proms that might not happen.
Miracles happen every day here at WVU Medicine Children’s, but some families will still hear that worst news: their baby has died. The joy of meeting their child for the first time is streaked with devastating heartbreak.
We believe that it is just as important to care for families grieving the loss of an infant as it is to care for the infants in our Neonatal Intensive Care Unit. The Supportive Care Team is with families from the point of diagnosis and every step of the way, to make sure that each family knows two things: it’s not their fault, and they have time.
Time with their child is the most valuable thing in the world to a family experiencing this loss. We help families think creatively about how to fulfill the hopes they had for spending time with their child. Families can change a diaper, give a bath, read books, take pictures, and build as many memories as they can with their baby before they leave the hospital.
We offer families gifts and transition objects, such as handmade quilts and small teddy bears, and we give legacy pieces, such as heirloom photography, plaster castings of the child’s hands and feet, and angel gowns, which are beautiful infant gowns created from donated wedding dresses. Delivering these items also gives us an opportunity to check in frequently with the family in the first months after they go home.
The hospital recently received a gift that is meant to help families feel more comfortable spending time with their child, donated by a family who has experienced infant loss.
Bill and Nicole Dice were only able to spend 89 precious minutes with their son before he passed away on November 6, 2015. Like WVU Medicine Children’s, the hospital where he was born encouraged them to keep Daniel with them throughout their four-day hospital stay, and the memories made in those few days still bring Bill and Nicole peace in their grief.
That time was so valuable to the Dices that they founded a nonprofit called Loving Daniel to provide the gift of time to other grieving families. In association with the United States Cuddle Cot Campaign Initiative through Stories of Babies Born Still (SOBBS), the Dices donate Cuddle Cots to hospitals in the region. The cot allows infants who have passed away to stay with their families longer by discretely cooling the baby to delay deterioration. It includes a quiet cooling unit that connects to a mat that fits under a blanket in any bassinet. The Cuddle Cot at WVU Medicine Children’s is the third cot that the Dices placed before Daniel’s first birthday.
Some families may need four days, and some may need only four hours with their child. We help families personalize that time with music, soft lighting, or special items from home. We do whatever we can to seal a moment in time when people get to be a family with their child.
When a family is ready to leave the hospital, we give them materials on bereavement and connect them with local support groups. We check in regularly over the first year and longer, if needed, helping parents recognize special days like the child’s first birthday. Our inclusive annual Service of Remembrance remembers children from perinatal loss to the death of an adult child.
The main thing we hear from grieving families is that they do not want their children to be forgotten. We help create positive memories of their little ones and their arc of life that, while short, will always shine brightly in the hearts of those that love them.